It's been hard to describe my visual experience to others. People often underestimate and overestimate my limitations. To random people in the world, I'm sure I look crazy weird as I try to navigate stairs and shadows. To people who see me in my familiar settings, I appear completely free of disability.
A few months ago I had my yearly appointment with a retina specialist to get the latest information on the degradation of my retinal cells. No surprise--things are worse. But when I was talking to the specialist in this field and tried to describe my problem with stairs he didn't understand what I meant. As this is one of the signal difficulties I experience with RP (Retinitis Pigmentosa), I assumed he would be familiar with this and would have heard similar complaints from other patients. Nope. This just underscored to me the fact that every person experiences RP differently, which also makes it feel more difficult to explain the experience, and makes me feel more alone in my experience.
Lighting makes a huge difference. On a foggy or overcast day, I can navigate much more easily. On a sunny day every shadow feels like a looming tree branch or eave about to crash into my head. I've bashed my head enough times to be wary. Walking into shade feels like walking into an abyss. There could be flat sidewalk ahead or stairs or a hole. This is when I start to look crazy as I walk about. If I suddenly duck when there's nothing there (except a shadow) I look like the lady who talks to herself. Scanning about for signals like railings or stripes I will tentatively step forward. Most likely, I am talking to myself at that point which only adds to the craziness. I bump into people a lot. I am unintentionally rude in art museums because if I'm focusing on a piece of art I cannot focus on someone else's line of sight.
I have absolutely no ability to discern where steps start and when it is the last step. This has been the most hazardous aspect of RP so far. And it's been hell on my shoes because I have to tap forward to find the next step going up and bang my heel backwards when going down stairs. Have you ever had the experience of thinking that you are at the bottom of the stairs and then discovering, with a thud of your foot, that there is one more? That happens to me often when I am in an unfamiliar setting. Have you ever tripped on an unexpectedly lifted bit of cement? That happens constantly to me. It turns out you can't look down at the ground to watch your step at the same time as looking up for looming branches,etc., as well as traffic and other pedestrians AT THE SAME TIME.
All the vision I do have is at the center so I have to scan to get the full picture of what is around me. If I'm talking to you, I can't see the person next to you which leads to me unintentionally being rude in conversations because I'll miss cues that someone is about to speak and things like that. It also contributes to my hesitancy crossing streets. Did I miss any cars or bikes or pedestrians?
I have absolutely no night vision. My eyes do not adjust to the dark, ever. For some reason, many museums have very dark rooms or corridors, especially in displays of video. There I have to basically hug the wall and creep along slowly like an agoraphobic.
Westminster Abbey was an incredible challenge. The stone floors, being centuries old, are quite uneven and there are random steps up and down with no warning or railings. it was totally nerve-wracking, especially because I wanted to be looking around at the wonderful architecture and tombs and stained glass and not at the stones at my feet. London, in general, is a place of uneven sidewalks and then there's the fact of cars coming from unexpected (to me) directions.
I had a revelation this past summer when I dropped the boys off at preschool and walked out into the sun by myself. I was instantly incredibly tentative and realized that I had been using first the stroller and then the boys as guides. When pushing the stroller I had a way of 'feeling' what the ground was like and walking with the boys each holding a hand, I could gauge from their actions what the ground was like.
Tonight, walking home from dinner, I said to Keith: "I hate that it's just a matter of time until I fall again." He started in about using the white cane more often, etc., etc. Finally I just had to say that even with every precaution, it's still a matter of time. I still have a bump next to my eye from my fall in San Francisco. It's scary just to take a step when you don't know where your foot will land. And yes, I will use the cane more often.